“Like before, but not exactly”: the Qualy-REACT qualitative inquiry into the lived experience of long COVID

Abstract:

Background: Post-acute sequelae of SARS-CoV-2 infection (PASC) affect millions of individuals worldwide. Rehabilitation interventions could support individuals during the recovery phase of COVID-19, but a comprehensive understanding of this new disease and its associated needs is crucial. This qualitative study investigated the experience of individuals who had been hospitalized for COVID-19, focusing on those needs and difficulties they perceived as most urgent.

Methods: This naturalistic qualitative study was part of a single-center mix-method cross-sectional study (REACT) conducted in Italy during the first peak of the SARS-CoV-2 pandemic. The qualitative data collection took place through a telephone interview conducted 3 months after hospital discharge. The experience of individuals discharged after hospitalization for COVID-19 was investigated through the main research question – “Tell me, how has it been going since you were discharged?”. Two secondary questions investigated symptoms, activities, and participation. Data were recorded and transcribed verbatim within 48 h. An empirical phenomenological approach was used by the researchers, who independently analyzed the data and, through consensus, developed an interpretative model to answer the research question. Translation occurred after data was analyzed.

Results: During the first peak of the COVID-19 pandemic, 784 individuals with COVID-19 were discharged from the hospitals of the Local Health Authority of the Province of Reggio Emilia (Italy); 446 were excluded due to the presence of acute or chronic conditions causing disability other than COVID-19 (n. 339), inability to participate in the study procedures (n. 56), insufficient medical documentation to allow for screening (n. 21), discharge to residential facilities (n. 25), and pregnancy (n. 5). Overall, 150 individuals consented to participate in the REACT study, and 56 individuals (60.7% male, average age 62.8 years ±11.8) were interviewed in June-July 2020, up to data saturation. Persistent symptoms, feelings of isolation, fear and stigma, emotional distress, a fatalistic attitude, and return to (adapted) life course were the key themes that characterized the participants’ experience after hospital discharge.

Conclusions: The experience as narrated by the participants in this study confirms the persistence of symptoms described in PASC and highlights the sense of isolation and psychological distress. These phenomena may trigger a vicious circle, but the participants also reported adaptation processes that allowed them to gradually return to their life course. Whether all individuals are able to rapidly activate these mechanisms and whether rehabilitation can help to break this vicious circle by improving residual symptoms remain to be seen.

Source: Schiavi M, Fugazzaro S, Bertolini A, Denti M, Mainini C, Accogli MA, Bedogni G, Ghizzoni D, Esseroukh O, Gualdi C, Costi S. “Like before, but not exactly”: the Qualy-REACT qualitative inquiry into the lived experience of long COVID. BMC Public Health. 2022 Mar 28;22(1):599. doi: 10.1186/s12889-022-13035-w. PMID: 35346138; PMCID: PMC8960224. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8960224/ (Full text)

Updated ME/CFS prevalence estimates reflecting post-COVID increases and associated economic costs and funding implications

Abstract:

In this article, we update our earlier analyses of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) economic impact and its National Institutes of Health (NIH) funding versus disease burden, taking into account the anticipated new cases of ME/CFS resulting from COVID-19.

Prior to the COVID pandemic, we estimated a United States ME/CFS prevalence of 1.5 million and an annual economic impact of $36–51 billion. Now, due to COVID and its resulting post-acute sequalae, we estimate total ME/CFS prevalence could rise to between five and nine million. This would incur an annual U.S. economic impact of $149 to $362 billion in medical expenses and lost income, exclusive of other costs, such as disability benefits, social services, and lost wages of caretakers. NIH funding for ME/CFS research would need to expand from the current amount of $15 million per year to approximately $472–$600 million annually, up to a 40-fold increase, to be commensurate with that of similarly burdensome diseases.

Source: Arthur A. Mirin, Mary E. Dimmock & Leonard A. Jason (2022) Updated ME/CFS prevalence estimates reflecting post-COVID increases and associated economic costs and funding implications, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2022.2062169 https://www.tandfonline.com/doi/abs/10.1080/21641846.2022.2062169?journalCode=rftg20  (Full text)

Detection of Male Hypogonadism in Patients with Post COVID-19 Condition

Abstract:

The pathogenesis and prognosis of post COVID-19 condition have remained unclear. We set up an outpatient clinic specializing in long COVID in February 2021 and we have been investigating post COVID-19 condition. Based on the results of our earlier study showing that “general fatigue” mimicking myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is the most common symptom in long COVID patients, a retrospective analysis was performed for 39 male patients in whom serum free testosterone (FT) levels were measured out of 61 male patients who visited our clinic.

We analyzed the medical records of the patients’ backgrounds, symptoms and laboratory results. Among the 39 patients, 19 patients (48.7%) met the criteria for late-onset hypogonadism (LOH; FT < 8.5 pg/mL: LOH group) and 14 patients were under 50 years of age. A weak negative correlation was found between age and serum FT level (r = -0.301, p = 0.0624).

Symptoms including general fatigue, anxiety, cough and hair loss were more frequent in the LOH group than in the non-LOH group (FT ≥ 8.5 pg/mL). Among various laboratory parameters, blood hemoglobin level was slightly, but significantly, lower in the LOH group. Serum level of FT was positively correlated with the levels of blood hemoglobin and serum total protein and albumin in the total population, whereas these interrelationships were blurred in the LOH group.

Collectively, the results indicate that the incidence of LOH is relatively high in male patients, even young male patients, with post COVID-19 and that serum FT measurement is useful for revealing occult LOH status in patients with long COVID.

Source: Yamamoto Y, Otsuka Y, Sunada N, Tokumasu K, Nakano Y, Honda H, Sakurada Y, Hagiya H, Hanayama Y, Otsuka F. Detection of Male Hypogonadism in Patients with Post COVID-19 Condition. J Clin Med. 2022 Mar 31;11(7):1955. doi: 10.3390/jcm11071955. PMID: 35407562. https://www.mdpi.com/2077-0383/11/7/1955/htm (Full text)

Bodies in lockdown: Young women’s narratives of falling severely ill with ME/CFS during childhood and adolescence

Abstract:

Thirteen women (16-30 years) storied their experiences about the process of falling severely ill with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome during childhood and adolescence. We performed a narrative analysis informed by phenomenology which yielded three central themes: The active and meaningful life I used to live; gradually developing unhomeliness and feeling pushed toward the edge; and left abandoned on the sidelines. Out of the incomprehensible and unpredictable emerges an understanding of the scale of their ordeal, along with advice that may have made it worse. This portrays a gradual developing uncertain, unhomely life situation with no outlooks for future recovery.

Source: Krabbe SH, Mengshoel AM, Schrøder Bjorbækmo W, Sveen U, Groven KS. Bodies in lockdown: Young women’s narratives of falling severely ill with ME/CFS during childhood and adolescence. Health Care Women Int. 2022 Apr 11:1-23. doi: 10.1080/07399332.2022.2043862. Epub ahead of print. PMID: 35404768.  https://www.tandfonline.com/doi/full/10.1080/07399332.2022.2043862 (Full study)

Patient-Reported Symptoms and Sequelae 12 Months After COVID-19 in Hospitalized Adults: A Multicenter Long-Term Follow-Up Study

Abstract:

Objective: Our knowledge on the long-term consequences of COVID-19 is still scarce despite the clinical relevance of persisting syndrome. The aim of this study was to analyze patient-reported outcomes, including assessment by specific questionnaires of health impairment and symptoms.

Methods: This is a prospective, observational and multicenter cohort study coordinated by Fondazione IRCSS Ca’ Granda Ospedale Maggiore Policlinico di Milano and Istituto di Ricerche Farmacologiche Mario Negri IRCCS including eight hospitals located in North and Central Italy. A telephone interview to assess rehospitalization, access to health care resources, general health status subjective evaluation, and symptoms was performed at 12 months after the discharge in patients admitted to hospital because of COVID-19 from February 2020 to the end of May 2020.

Results: Among the 776 patients discharged alive, 44 (5.7%) died, 456 subjects (58.8%) completed the questionnaire and 276 (35.6%) were not reachable or refused to join the telephone interview. The mean age of the study population was 59.4 years (SD 14.1), 69.8% of individuals needed oxygen support during hospitalization and 10.4% were admitted to ICU. Overall, 91.7% of participants reported at least one symptom/sequela at 12 months. Exertional dyspnea (71.7%), fatigue (54.6%), and gastrointestinal symptoms (32.8%) were the most reported ones. Health issues after discharge including hospitalization or access to emergency room were described by 19.4% of subjects. Female and presence of comorbidities were independent predictors of health impairment and presence of ≥2 symptoms/sequelae after 12 months from hospitalization for COVID-19.

Conclusions: Patient-reported symptoms and sequelae, principally dyspnea and fatigue, are found in most individuals even 12 months from COVID-19 hospitalization. Long-term follow-up based on patient-centered outcome can contribute to plan tailored interventions.

Source: Comelli A, Viero G, Bettini G, Nobili A, Tettamanti M, Galbussera AA, Muscatello A, Mantero M, Canetta C, Martinelli Boneschi F, Arighi A, Brambilla P, Vecchi M, Lampertico P, Bonfanti P, Contoli M, Blasi F, Gori A, Bandera A. Patient-Reported Symptoms and Sequelae 12 Months After COVID-19 in Hospitalized Adults: A Multicenter Long-Term Follow-Up Study. Front Med (Lausanne). 2022 Mar 22;9:834354. doi: 10.3389/fmed.2022.834354. PMID: 35391879; PMCID: PMC8981315. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8981315/ (Full study)

Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome with partial least squares discriminant analysis: Relevance of blood extracellular vesicles

Abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic disease characterized by long-lasting persistent debilitating widespread fatigue and post-exertional malaise, remains diagnosed by clinical criteria. Our group and others have identified differentially expressed miRNA profiles in the blood of patients. However, their diagnostic power individually or in combinations seems limited. A Partial Least Squares-Discriminant Analysis (PLS-DA) model initially based on 817 variables: two demographic, 34 blood analytic, 136 PBMC miRNAs, 639 Extracellular Vesicle (EV) miRNAs, and six EV features, selected an optimal number of five components, and a subset of 32 regressors showing statistically significant discriminant power. The presence of four EV-features (size and z-values of EVs prepared with or without proteinase K treatment) among the 32 regressors, suggested that blood vesicles carry relevant disease information. To further explore the features of ME/CFS EVs, we subjected them to Raman micro-spectroscopic analysis, identifying carotenoid peaks as ME/CFS fingerprints, possibly due to erythrocyte deficiencies. Although PLS-DA analysis showed limited capacity of Raman fingerprints for diagnosis (AUC = 0.7067), Raman data served to refine the number of PBMC miRNAs from our previous model still ensuring a perfect classification of subjects (AUC=1). Further investigations to evaluate model performance in extended cohorts of patients, to identify the precise ME/CFS EV components detected by Raman and to reveal their functional significance in the disease are warranted.

Source: González-Cebrián Alba, Almenar-Pérez Eloy, Xu Jiabao, Yu Tong, Huang Wei E., Giménez-Orenga Karen, Hutchinson Sarah, Lodge Tiffany, Nathanson Lubov, Morten Karl J., Ferrer Alberto, Oltra Elisa. Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome With Partial Least Squares Discriminant Analysis: Relevance of Blood Extracellular Vesicles. Frontiers in Medicine, 9, 2022 , DOI: 10.3389/fmed.2022.842991 https://www.frontiersin.org/article/10.3389/fmed.2022.842991 (Full study)

Please Help David Tuller, Our Champion!

UPDATE: David Tuller’s fundraiser made its goal! A HUGE thank you to everyone who donated. You are helping David continue his important work on our behalf. Thank you to everybody!

David Tuller’s spring fundraiser is now live! Tuller has been tireless in his battle against the GET/CBT ideological onslaught! He has much more work to do and he needs our support.

Tuller has written more than seventy-five  posts on Vincent Racaniello’s Virology Blog, spanning ten years. His articles comprise a full history of how the PACE trial was used to mislead health care providers into thinking ME/CFS could be cured with “a walk and a talk.” Tuller has taken on some of the authors of the PACE study and, despite threats from them, has continued to challenge their findings.

In 2021, Tuller explored the intersections between the pandemic and ME, including the overlap between ME/CFS and long Covid. He kept an eye out for new bad research (CBT/GET, Lightning Process) as well as keeping an eye on goings-on at the CDC, the NIH and elsewhere.

This year, Tuller will continue in his efforts. “Because of long Covid’s range of reported symptoms, many people with the illness have medical issues unrelated to ME and will not receive an ME diagnosis. But a great many will,” he says. “So examining long Covid in the context of these scientific debates over the source and cause of the devastating symptoms is critical to sustain the momentum of change in the ME domain and affirming the advances in the ME field that have been made to date.”

Last year, Tuller successfully raised money through Crowdrise  in order to continue investigating and blogging about the PACE trial. The funds went to the School of Public Health at the University of California, Berkeley, which created a position for Tuller to continue his investigative work. Now, a year later, the funds have run out, and Tuller has to depend on the generosity of our community to continue his work.

The struggle continues! And David is fighting hard for us!

PLEASE DONATE HERE!

Persistent Brain Fog After Mild COVID Infection Tied to CSF Markers

Abstract:

As cases of coronavirus disease 2019 (COVID-19) mount worldwide, attention is needed on potential long-term neurologic impacts for the majority of patients who experience mild to moderate illness managed as outpatients. To date, there has not been discussion of persistent neurocognitive deficits in patients with milder COVID-19. We present two cases of non-hospitalized patients recovering from COVID-19 with persistent neurocognitive symptoms. Commonly used cognitive screens were normal, while more detailed testing revealed working memory and executive functioning deficits.

An observational cohort study of individuals recovering from COVID-19 (14 or more days following symptom onset) identified that among the first 100 individuals enrolled, 14 were non-hospitalized patients reporting persistent cognitive issues. These 14 participants had a median age of 39 years (interquartile range: 35-56), and cognitive symptoms were present for at least a median of 98 days (interquartile range: 71-120 following acute COVID-19 symptoms); no participants with follow-up evaluation reported symptom resolution. We discuss potential mechanisms to be explored in future studies, including direct viral effects, indirect consequences of immune activation, and immune dysregulation causing auto-antibody production.

Source: Hellmuth J, Barnett TA, Asken BM, Kelly JD, Torres L, Stephens ML, Greenhouse B, Martin JN, Chow FC, Deeks SG, Greene M, Miller BL, Annan W, Henrich TJ, Peluso MJ. Persistent COVID-19-associated neurocognitive symptoms in non-hospitalized patients. J Neurovirol. 2021 Feb;27(1):191-195. doi: 10.1007/s13365-021-00954-4. Epub 2021 Feb 2. PMID: 33528824; PMCID: PMC7852463. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7852463/ (Full text)

Post COVID fatigue: Can we really ignore it?

Abstract:

Long-COVID, also referred to as post-acute COVID-19, chronic COVID-19, post-COVID syndrome, or post-acute sequelae of SARS-CoV-2 infection (PASC), generally refers to symptoms that develop during or after acute COVID-19 illness, continue for ≥12 weeks, and are not explained by an alternative diagnosis. It is not yet known whether “long-COVID” represents a new syndrome unique to COVID-19 or overlaps with recovery from similar illnesses. It’s difficult for physicians to predict when symptoms will improve as it varies differently in different people. Patient’s recovery depends on various factors including age, associated comorbidities, severity of COVID-19 infection. Some symptoms, like fatigue, might continue even while others improve or go away. This review addresses the pathogenesis, presentation of post covid fatigue, its severity and its management.

Source: Sharma P, Bharti S, Garg I. Post COVID fatigue: Can we really ignore it? Indian J Tuberc. 2022 Apr;69(2):238-241. doi: 10.1016/j.ijtb.2021.06.012. Epub 2021 Jun 23. PMID: 35379408. https://pubmed.ncbi.nlm.nih.gov/35379408/

Magnetic Resonance Imaging Confirmed Olfactory Bulb Reduction in Long COVID-19: Literature Review and Case Series

Abstract:

An altered sense of smell and taste was recognized as one of the most characteristic symptoms of coronavirus infection disease (COVID-19). Despite most patients experiencing a complete functional resolution, there is a 21.3% prevalence of persistent alteration at 12 months after infection. To date, magnetic resonance imaging (MRI) findings in these patients have been variable and not clearly defined. We aimed to clarify radiological alterations of olfactory pathways in patients with long COVID-19 characterized by olfactory dysfunction.
A comprehensive review of the English literature was performed by analyzing relevant papers about this topic. A case series was presented: all patients underwent complete otorhinolaryngology evaluation including the Sniffin’ Sticks battery test. A previous diagnosis of SARS-CoV-2 infection was confirmed by positive swabs. The MRIs were acquired using a 3.0T MR scanner with a standardized protocol for olfactory tract analysis. Images were first analysed by a dedicated neuroradiologist and subsequently reviewed and compared with the previous available MRIs.
The review of the literature retrieved 25 studies; most cases of olfactory dysfunction more than 3 months after SARS-CoV-2 infection showed olfactory bulb (OB) reduction. Patients in the personal case series had asymmetry and a reduction in the volume of the OB. This evidence was strengthened by the comparison with a previous MRI, where the OBs were normal. The results preliminarily confirmed OB reduction in cases of long COVID-19 with an altered sense of smell. Further studies are needed to clarify the epidemiology, pathophysiology and prognosis.
Source: Frosolini A, Parrino D, Fabbris C, Fantin F, Inches I, Invitto S, Spinato G, Filippis CD. Magnetic Resonance Imaging Confirmed Olfactory Bulb Reduction in Long COVID-19: Literature Review and Case Series. Brain Sciences. 2022; 12(4):430. https://doi.org/10.3390/brainsci12040430 (Full text)